My name is Lu Quast. I have stage 3(c) primary peritoneal cancer, a very rare sub-type of ovarian cancer that shares its cell-type with ovarian cancer but originates in the abdominal cavity rather than the ovaries. I was diagnosed in February of 2010, two weeks before my 75th birthday and a full year after my first medical complaint and doctor visit.
Ovarian cancer has no cure. There is no reliable test. It is difficult to diagnose, but when detected early the survival rates are much better. I can assure you ovarian cancer is NOT asymptomatic. That appears to be conventional wisdom in some medical circles, but I have never heard an ovarian cancer patient or survivor anywhere say they had no symptoms. Here are some of them: increased abdominal size, bloating, fatigue, frequent urination, incontinence, pelvic or abdominal pain, constipation, inability to eat normal amounts and palpable mass. They are hard to diagnose, and tend to mimic normal signs of aging. The symptoms of ovarian cancer are subtle but the consequences are dire.
At the time I began to feel unwell, I was teaching English at a local college, having retired my law practice nearly 10 years earlier, and I was happy with my life. For years, I had been a competitive sprinter and javelin thrower, did Pilates three times a week, lifted weights with a trainer, did CrossFit twice a week, and took long walks most days. I saw my doctors annually, was always up to date on my tests, and lived a truly healthy life with no health problems, or so I thought, as did my doctors. I looked much younger than my age and wore a bikini into my 70s, so the first thing I began to notice in late 2008 was the development of a little belly which neither more abdominals or diet would touch. My gynecologist said, “All women tend to gain weight around their mid-section as they age.”
When I felt a strange pain in my groin in early 2009, I thought it was exercise-related and went to see my sports medicine doctor. I could point to the pain very specifically. It seemed to be on a tendon, but he was baffled. Sometimes long distance runners had injuries in that area, but I wasn’t a long distance runner. He was eager to try his new, portable, ultrasound machine and, after running it around here and there, said, “You know, something in there doesn’t look right to me. I think you should see your gynecologist.
So I did — and my internist as well. He sent me for abdominal, pelvic trans-abdominal and trans-vaginal ultrasounds. Ovarian cancer must have crossed someone’s mind because these were the appropriate tests, but it never crossed my mind, and the word “cancer” was never uttered. Results of the ultrasounds were negative. No CA-125 blood test was requested. Later I was told, “the CA-125 is not a diagnostic test; there are too many false positives.” Apparently that’s conventional medical wisdom. But in my particular case, the cancer would not have been visible on the ultrasounds. I believe the CA-125 was the only test that might have indicated what was wrong. Since then, I’ve read materials from both the Ovarian Cancer National Alliance and the CDC that say, “recto-vaginal pelvic exams, trans-vaginal ultrasounds, and CA-125 blood tests can be used in combination to help diagnose ovarian cancer.” No CA-125 was ordered for me until late January of 2010. By then, it was over 500. An entire year had been wasted. But I’m getting ahead of myself . . .
I had other problems that year. There was increasing urinary incontinence. “All women have that, and anyway, you’re getting older,” I was told. The same thing with increasing aches and pains. “It’s part of the aging process.” I was sent to a urologist, a rheumatologist and had a colonoscopy. All tests were negative.
I didn’t feel well. I was exhausted; I fought drooping eyelids to stay awake at work. But I kept exercising. Three times that year I fainted in my house. I couldn’t eat big meals, but I had always preferred small ones anyway. I was waking up at night having to urinate, and was having trouble making it from my bed to the bathroom. The belly got bigger. My clothes got tighter and I began to wear big tops. My ankles were swelling. I began to think, “Well, I’m 74 and I’ve never been here before. I feel sick, not old, but maybe this is what old age feels like.”
Then at Thanksgiving time, I got a very strange, very bad cold like no cold I had ever had. I coughed and wheezed uncontrollably with what seemed to be bronchitis. It continued all through the holidays. I asked my internist, “Should a cough last longer than a month?” “Absolutely not,” he said, and prescribed steroids. My symptoms went wild: ankles and feet so big I had trouble wearing shoes, stomach more and more bloated. Side effects, I thought, and asked to go off the medication. I expected the symptoms to go away then, but they got much worse. The doctor then sent me to the emergency clinic for a CAT scan and x-rays. I was then ambulanced to the hospital for more tests.
My older daughter flew in the next day and spent the following three days with me in the hospital. I was put on morphine for pain, and had another colonoscopy. I was then discharged without a diagnosis, feeling sicker than when I had come. Just before I left, the doctor on staff finally ordered that first CA-125 blood test.
The next day my daughter flew back to Indiana carrying the CAT scan and x-ray discs for my son in law, a radiologist, to review. I went back to work. Sick and exhausted, I got through the day, went home and straight to bed with my clothes on. I hadn’t had lunch, slept through dinner and breakfast the next morning, and was finally awakened by the phone. My son-in-law said, “We’ve looked at the discs and I’m sorry to say you have cancer.” My other daughter flew in the next day, and we packed up and flew to Indiana together. Debulking surgery performed a few days later revealed tumorous growth concentrated in the omentum, which was removed along with fallopian tubes and ovaries, all of which indicated stage 3C serious adenocarcinoma.
The rest is a blur. I slept a lot and came to know what a wonderful, supportive family I have. I looked for materials on cancer, searching for what the prognosis might be. “If you have ovarian cancer, you will die of the disease,” I read. “There is no cure; the average survival time for stage 3 (c) cancer is two years.” Silently, I cried.
The first two six month chemotherapy treatments led to remissions of approximately one year. The third treatment was ineffective.
I am now designated “late stage” and receive hospice care. I drink only liquids, and all my stamina is gone. I ponder such subjects as where I’d like to be buried. My family is close and supportive and my friends are warm and helpful, but I now know that death is a lonely road.
I present this story to you in the hope that you will remember it and me and recognize the ovarian cancer case that some day walks in you door.
A comment made by a gynecological oncologist at the OCNA conference I attended: Don’t rule ovarian cancer in — Rule It Out: start with the assumption that it might be ovarian cancer and then prove it’s not.
If you find yourself saying to some female patient, “Well, we are all getting older now, aren’t we?” Stop! Think, “Could this be ovarian cancer?” and then, carefully, step by step, rule it out. Do this for me, for you, for your patients and for the women in your life.
Daughters note: Lu passed away on July 30, 2013 after a valiant battle.